Celiac Disease: It’s More Than Just The Trots

Let’s say that someone in your family had a history of breast or testicular cancer. Then one morning you are in the shower and you feel a lump in your breast or testicle. What would you do? Would you go see your doctor to be evaluated? Of course you would, right?! You wouldn’t sit at home and try to ignore the lump. You wouldn’t say, “my breast/teste is too important to me so I don’t want to find out what this lump is because that may mean losing it.” That could possibly be suicidal, right? Well, Celiac Disease is no different. Untreated Celiac Disease can cause conditions that can be fatal. It should not be ignored. Good nutrition is the basis of health and Celiac Disease prevents good nutrition. In CD, even minute amounts of gluten (which is found in more than just “flour”) will destroy your small intestine. It will cause damage even if you are not having symptoms. Your small intestine is where all the vitamins, minerals, protein, etc is absorbed. They are absorbed by tiny little finger like projections called villi. Celiac Disease flattens and destroys those villi making it impossible to absorb the nutrition you need to stay healthy and fight disease. Gluten will eventually cause disease, debility and yes, even death in a person with CD. CD is an auto immune disease. It is not an allergy, a sensitivity or an intolerance. It needs to be taken as seriously as cancer. It is more than just the inconvenience of a few extra trips to the bathroom.

I talked to a woman a couple of weeks ago and she was saying that her friend has a daughter with CD. “But she (the young girl) has so many other health issues that (the mother) just lets it (the CD) go.” She said that the diet was just too hard and the child’s symptoms weren’t that bad so they just don’t worry about it. I could not believe what I was hearing. Clearly it isn’t completely the mothers fault that there is a Grand Canyon’s worth of education missing in this family. That mother has no idea that most, if not all, of the child’s other issues are a result of her Celiac Disease and just because she wasn’t having diarrhea did not mean that it wasn’t an enormous problem. The woman told me that this poor little kid has crippling Rheumatoid Arthritis. It is so bad she can’t even walk up stairs. It is heartbreaking to me that the mother doesn’t know that RA is also an autoimmune disease and that it was likely triggered by untreated CD. Why didn’t the girl’s doctor educate the mother? Maybe it was because he didn’t know. When my husband was diagnosed they weren’t looking for CD so we had no idea what was coming. We were completely unprepared. The day he got that diagnosis the doctor handed him his biopsy results and said “you need to go on a gluten free diet, permanently.” That was it. No further education. Done. He just got instructions to follow up for another biopsy in one year. When my friend was diagnosed this March, her GI doctor told her that “at least you can still have Mexican food.” (I can’t even count the number of ways that this is wrong.) Again, no education, no referral to someone who could educate.

The newest research says that 1 in 100 people have CD and that if you have a blood relative that has CD, you have a 1 in 22 chance of having it. Mark my words here and now: those numbers are inaccurate and the true number is much, much higher. Of all the people I know that have CD, they are not the only one in their family who has it. If you have a family member that has CD you NEED to be screened. Saying that the diet is just too difficult or you don’t have the time to do it or that you love your bread or pasta or whatever too much, isn’t a good enough reason to not get screened. You need to ask your doctor to have the appropriate blood work done. If he/she refuses then find another doctor. Some doctors still believe that CD is rare. You need to be screened even if you don’t have diarrhea. Some people have constipation. Some people have both and some people don’t have a single symptom and do not feel sick. That doesn’t mean that they don’t have the disease or that the gluten that they are ingesting is not damaging their body. It may just mean they don’t have symptoms yet. When you do get your blood drawn keep in mind that a negative result does not mean that you don’t have CD and are free and clear forever. It just means that you don’t have enough antibodies in your blood on that day. That could change in a month or a year or never. The point is, you won’t know if you aren’t screened. There is a grey area or continuum in CD diagnosis, meaning that there is a period of time from when the disease starts to when antibodies can be detected in your blood. That period of time is different for everyone. So, if you have symptoms or if you have a family member who has it, you should be screened regularly. If you have any autoimmune diseases (Type 1 diabetes, Arthritis, thyroid disorders etc) know that autoimmune diseases tend to come in groups. Meaning, if you have one you are at greater risk to have another.

I wonder about the number of kids that are on the autism spectrum (Aspergers, ADD, ADHD etc). There was a recent study just released about about the incidence of autism. Turns out it is much more prevalent that previously thought. I bring this up because I am absolutely positive that had we not had the diagnosis for my husband; my oldest daughter would be diagnosed with ADHD. When she ingests gluten she has more behavioral symptoms than GI (although she does have those too depending on dose). She gets hyperactive, defiant, belligerent, aggressive, angry, sad and volatile. It is horrible to see and our hearts break for her when this happens. I wonder if we would ever have gotten a diagnosis of CD if it weren’t for her daddy’s diagnosis since she doesn’t present with “typical” symptoms. Prior to eliminating gluten from her diet her only other symptom aside from the behavioral stuff was that she was small.

The previous mentioned friend had both her daughters tested and one was positive. Other than just being small, she had no symptoms. My friend encouraged her family to get tested. They did. Both her father and her only other sibling both have it. Now, I am no statistician but that does not work out to 1 in 22. It’s the same in my immediate family. 2 of our 3 kids have it. There are many in my husbands family that likely have it too. His mother and her father, though not diagnosed, in retrospect likely had it too. They both died in nursing homes with atypical Alzheimer dementia with a long history of bowel issues and depression. My husband is one of seven children. One other has an “assumed celiac” diagnosis and others report symptoms but have not yet been screened. That’s not 1 in 22 either. That is only a few examples of many I could site.

Here is a list of possible symptoms of CD. Here is a list of conditions that are associated with CD. Here is a list of conditions that are probably associated with CD. Yes, it’s a huge list and like I said, some people have no symptoms at all because the damage has just started. Don’t wait until you have a laundry list of those ailments and don’t wait until you have cancer. If you have a family member who has CD you must be screened and your children must be screened. Screen now and screen often. And pass on the message!

****If you are the owner of a gluten free / Celiac blog, please consider linking this post to your blog to help spread the message. Help me to increase Celiac awareness. Thanks****

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7 thoughts on “Celiac Disease: It’s More Than Just The Trots

  1. I agree with you wholeheartedly, Kim, on ALL your points.The sister of one of my son's Little League teammates has CD. I came to practice once and saw the girl happily munching on a taco from Jack in the Box. (http://www.jackinthebox.com/pdf/NutritionalGuide_2009.pdf) Um, it has wheat. I asked the mother, "Are you aware that those tacos have gluten?" And she said, "Yes, but they're the only tacos that don't cause symptoms for my husband and daughter."I had to focus to not let my jaw drop onto the grass below. I know another woman who has bipolar disorder symptoms ONLY when she eats gluten; she also has dx'ed CD. However, she'd rather go on bipolar meds and be "NORMAL" than be gluten-free. Seriously. And then, there's that lady's mom, who has debilitating RA, and who is NOT on a g.f. diet, and hasn't been screened for CD, even though she has two of her own five kids with CD, and she herself has RA!!!! I can't wrap my head around that.Then, there's my Dad, who has ALL of the classic CD symptoms — including now what looks like dermatitis herpetiformis. I urged him to ask his dermatologist to do a biopsy. He hasn't. He switched detergent (to my homemade recipe) and called to report that his skin is somewhat better after using the detergent. !!!! GET YOURSELF SCREENED ALREADY!!!!!Ugh.In my own family of seven, there are three of seven that have CD. Also, my husband has alopecia areata, which is an autoimmune disorder, and he decided to go full bore and put himself on a g.f. diet about a year ago. There have also been studies that show that pretty much EVERY autoimmune disorder will show improvement if the patient will go on a g.f. diet. Here's an article on the connection between CD and alopecia: http://celiacdisease.about.com/od/symptomsofceliacdisease/a/Alopecia.htm If you Google ANY autoimmune disorder together with "gluten free diet," you will assuredly come up with a study (or multiple studies) that show a connection between that disorder and CD and/or how a g.f. diet is beneficial.But… Americans are very attached to their food and their way of life, and very few are willing to do what it takes to restore themselves to health. Americans in general have high skepticism about their food being connected to their health. And, unlike you and me, I have discovered that a great number of people are SADLY just not curious. They don't look into, "Well, why am I feeling this way?" It would take a simple Google search, but that seems to be too much for a lot of people.Did you see that House episode where it turns out that the patient involved had CD? Even I didn't guess it. But, being that it's fictional, they took all of the WORST possible symptoms, like psychosis (which not every person with CD has) and had the lady kill her newborn in a psychotic state… Very sad. Still, though, in a way I was glad for the episode, because I think that, if anything, people underestimate the effects of CD, and like you lament, say, "Well, if I'm not having the runs, I must be OK." (Long comment! Sorry! It's a soapbox issue for me, too.)

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  2. My husband's aunt has celia disease. She didn't find out until she was 48 years old. No one else that we know of has celiac disease. I think that someone else probably has it knowing the statistics.My husband had the blood tests done and it came back negative. You say here that the antibodies can not be there one day and there the next. How can someone be sure that their screening is accurate? Should they consume a lot of gluten before their screening? Do they need to be screened often? What are the tests that are most accurate?My email is becca.curzon@gmail.com.

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  3. Becca,Thanks for the comment.There is a grey zone in CD diagnosis meaning that first your body starts the autoimmune reaction to gluten and damage to your gut starts. As you continue to eat gluten (if you have CD) your blood levels of the antibodies and the visible damage to your intestine will become more and more obvious. http://www.enterolab.com explains it really well. If your husband is having symptoms then I personally would suggest getting screened every six months. I don't know if there is any real guideline for that. The other option for him would be to get gene tested. That way he could be excluded from the possibility if he didn't have the gene. If he does have the gene that doesn't mean that he has the disease but only means that there is a possibility that he will develop it. Before getting blood screened you have to be on your regular gluten laden diet. Do not change the amount you are eating. Going gluten free before the blood test will likely result in a negative result even if you have CD. Also, I just found this yesterday. http://www.celiachometest.com pretty cool, hey?!!

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  4. My daughter tested positive for celiac through a blood test & subsequent endoscopy in Jan 09 (she also has type 1 diabetes). The rest of the family was also given a blood test with no positive results. As a result of our personal choice to have our entire household GF I have since discovered that I am also celiac… I now get SEVERE symtpoms when I come in contact with gluten. I'm still kicking myself for drinking 1/4 of a Starbucks Gingerbread Latte this weekend without checking the internet first — (what an idiot I am — GINGERBREAD???) Anyways, I am baffled that after 40 years of eating gluten, and after only a few months of no gluten, I am now reacting so severely!? I worry about the damage that has been done for the past 40 years… 😦

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  5. Annoymous:Thanks for leaving a comment. I bet you are so thankful that you went gf in the first place. The current way we screen for CD is so flawed. There is a place out of Texas (I think) that tests for CD using stool instead of blood. It is apparently much more sensitive. You can also be gene tested through them. I wish this was the more common way of screening as I believe that many more people would be correctly diagnosed. The lab we used that I am speaking of is called Enterolab. ( enterolab.com ) The testing there is much more sensitive and you DO NOT have to be eating gluten in order to have the test done. We had our oldest daughter tested there while she was gluten free and we were still able to get a positive diagnosis.Did you have any symptoms prior to going gf? Do you feel different now?You mentioned 40 years of eating gluten and the damage that might have caused. It is quite possible that you have not had active CD for your whole life so maybe it isn't as bad as you thought. But it is a great thing that you know now!

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  6. I know that this was a rant, but thank you so much for taking to time to point out how common CD is and give links to the common symptoms for all different ages. After reading up on this I am convinced that my husband has CD, now to get him to test for it.

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